ag娱乐网址登录

无力的人间:脑瘫家庭的痛苦与挣扎

原创:王慧明ag娱乐网址登录健康网2020-09-22 17:32:23

ZAIZHONGGUO,YUEYOU500WANNAOTANJIATING,TAMENZHONGDEJUEDADUOSHUDUIYUNAOTANDERENZHIJIHUWEILING,SHENZHICUOWUDIBANAOTANHUANZHEDENGTONGYU“BAICHI、FEIREN、LEIZHUI”

PUTONGJIATINGZHONG,CUNZAIYIGENAOTANHUANER,YIWEIZHEWEILAIMANZHANGDERIZILI,XUYAOYOUYIWEIDARENRIYEZHAOGU,XISHENGDIAOJIATINGZHONGYIFENSHOURULAIYUAN;ERMANZHANGDEZHILIAOFEIYONGYIJIKANGFUXUNLIANXUXIAOHAODEJINQIAN,GENGSHIRANGYUANBENJIUBUFUYUDEJIATING“XUESHANGJIASHUANG”。

QIZHONGHAIYOUBUSHAOJIATINGYINWEISICHUQIUYIWENZHENERSHANGLE“TAIDUODEDANG”,XIANRU“PAOYIYUAN-HUAGUANGZHILIAOFEIYONG-FANGQIZHILIAO、YANGZAIJIAZHONG-ZOUTOUWULU”DEJIONGJING。

LAIZIGUANGDONGSHENGSHANTOUSHICHAONANQULONGTIANZHENACUNDEYUJIEYIJIA,BIANSHIQIZHONGZHIYI。GAOLING、LIUCHANXIANZHAO、ZAOCHAN、QUEYANG,YIXILIEDEJIXIANGBIAOMINGERZIXIAOJIEDEDANSHENGZHUDINGCHONGMANBOZHEYUFENGXIAN。

3NIANHOU,YIYUANYIFEN“NAOTANHUANER”DEZHENDUANSHU,ZUIZHONGBAZHEIGEJIATINGTUIXIANGHEIANDESHENYUAN……

1

冒险:高龄拼死生子,险象环生

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GENag娱乐网址登录SHENHUXI(ID:shenhuxiag娱乐网址登录)JIANGQIHAIZIHUANSHANGNAOTANDEGUSHI,TASHIERQINGXUDILUO,SHIERYANHANLEIGUANG,SHIERZHANGYUDUANTAN,XINQINGQIFUBUDING。ERYIPANGCAI6SUIDEXIAOJIESUIRANBIZIHEZUIBACHAMANLEXIXIDEZHANGGUAN,DANYANJINGZONGSHIDINGZHEYIPANGDEMUQIN,BUCHAOBUNAO,JIDUGUAIQIAO。

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SHUBUZHI,ZHEICIFUQI“TONGXIN”DEJUEDINGNIANGCHENGDEJIANGSHIYICHANG“BEIJU”。

JIUXIANGDIANYINGLIDEZAINANPIANYIYANG,BEIJUDEFASHENGZONGYOUXIEXUZHENGZHAO。YUJIEHUIYIHUAIYUN1GEYUEHOUCHUXIANDE“XIANZHAOLIUCHAN”SIHUJIJIJIANGDAOLAIDE“ZAINAN”QIAOXIANGLEJINGZHONG。

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◎ BAOTAIZHENDECHENGFENZHUYAOWEIHUANGTITONGHERENRONGMAOMOCUXINGXIANJISU,ZUOYONGSHICUJINPEITAIFAYU。/ QUANJINGSHIJUE

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“DANGSHIHAIZIDEQINGKUANG,SHEILAIKANYIYANDOUZHIDAOBUHAO。LAOGONGDEGEGEWENWOJIEXIALAIXIANGZENMEYANG?YISHENGHEHUSHIYEZAISIDIXIAQUANWOFANGQIZHILIAO,KETASHIWOSHENSHANGDIAOXIALAIDEYIKUAIROU,NIKANZHETAYOUHUXI、YOUXINTIAO,ZUOWEIMUQINZENMEKENENGSHUOBUYAOJIUBUYAOLENI?”YUJIEYUXINBUREN,LIPAIZHONGYI,JIANJUEDAIZHEHAIZICHUYUANLE。

2

现实:一次意外的摔倒,发现孩子是脑瘫儿

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“LINJUJIADEHAIZIHETAYIYANGDA,YIJINGNENGZOULULE,KEXIAOJIEZUOBUDAO,WODANGSHIYIWEISHIXUEBUCHEBIJIAOCHA,DAOZHIHAIZIXINGZOUFANGMIANFAYUBIJIAOHUANMAN,YUSHIJIAOHAIZIDEFUQINCONGSHENZHENMAILEYIGEXINDEJIHUILAI。”NEISHI,YUJIEBINGBUTAIZAIYI。

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YIYUANDEZUIZHONGJIANCHAJIEGUOZHENGSHIXIAOJIESHINAOTANER,3NIANLAITUIJIAOWULIDEYUANYINZHENGSHINAOFAYUSHOUDAOSUNHAIZAOCHENGLEYUNDONGZHANGAI。

◎ NAOTAN(cerebral palsy),QUANCHENGNAOXINGTANHUAN。SHIZHIYINGERCHUSHENGQIANDAOCHUSHENGHOUYIGEYUENEINAOFAYUZAOQI,YOUYUDUOZHONGYUANYINDAOZHIDEFEIJINXINGXINGNAOSUNSHANGZONGHEZHENG。/ QUANJINGSHIJUE

YUJIESHUO,NEISHIDIYICITINGSHUOZHEIGEJIBING,QUANJIARENNAOZIDOUSHIMENGDE,QIANYIMIAOHAIHUOBENGLUANTIAODEHAIZI,XIAYIMIAOQUEBEIYISHENGSHUOSHICANJIER。YUJIEXINGRONGZIJIJIUXIANG“TIANTAXIALAI”YIBANDEJUEWANG,GELEXUJIUCAIWENYISHENG:

“NEIXIAOJIEJINHOUHUIZENYANG,GAIZENMEBAN?”

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“GENBENMEIYOUQIANDAIZHEHAIZIQUJIBAIGONGLIWAIDEGUANGZHOU,WOLIANDAITALAIZHEIGEYIYUANDOUSHIXIANGZUOLINYOUSHEJIEDEQIAN。”YUJIEYANZHONGHANLEI,SHENGYINYOUXIEZHANDOU,ZHIDAOJINTIAN,YIJIASIKOURENHAIJIESUZAILAOGONGDEDAGEJIA,SHILAIPINGFANGMI、MEIYOUCHUANGHUDEXIAOWU,HAIZIDEYIFUZHUANGZAISULIAODAILI,GUAMANLEZHENGGEQIANGBI,QUELEYIJIAODEXIAOFANGZHUOHAISHIQUNIANWEILEHEDAGEJIAFENKAICHIERMAIDE。

“XIAOJIEDEFUQINHEWODOUSHITUSHENGTUZHANGDENONGCUNREN,ZHEIXIENIANHAIZIFUQINDAGONGZHUANDEQIANZHIGOUYIJIASIKOUMIANQIANGWEICHISHENGHUO,SHIZAINABUCHUDUOYUDEQIANJITAZHIBINGLE。”

3

困境:被透支的贫困家庭

2019NIAN,XIAOJIEXINGYUNDIBEIXUANZHONGKEMIANFEIDAOSHICANLIANNAOTANKANGFUZHONGXINJINXINGKANGFUZHILIAO。YUJIEQINGCHUJIDEXIAOJIEKANGFUXUNLIANDEDIYITIAN,DIYIJIESHIGONGNENGXUNLIANKE,YISHENGYONGMAOJINWUZHUXIAOJIEDETOU,YISHOUYAZAIZHUOSHANG,YISHOUTIQITADEKUZI。XIAOJIEDESHENTIXUANKONG,PINMINGDIZHENGZHA。

YUJIEKANDAOXIAOJIEDETUIZHILE,ZAIDENGTUI。DANTAMEIYOUXIANGGUO,XIAOJIEDEDIYICIDENGTUIXUYAORUCIXINKU,TADEYANLIZAOYIQINMANLEISHUI。30FENZHONGDEXUNLIANSHIJIANLI,BUDUANCHUANLAIXIAOJIESIXINLIEFEIDEKUHANSHENG,JIUXIANGYOURENYIXIAJIEYIXIADIZAICHUIDAYUJIEDEXIONGKOU。

◎ NAOTANDEYUNDONGGONGNENGZHANGAIJINGCHANGBANYOUGANJUE、ZHIJUE、RENZHI、JIAOLIUHEXINGWEIZHANGAI,YIJIDIANXIANHEJIFAXINGJIROU、GUGEDENGWENTI。/ QUANJINGSHIJUE

ZHEIYANGDERIZICHIXULEZHENGZHENGYINIAN,MEITIANZAOSHANG6DIANZHONG,YUJIEJIUDEDAISHANGXIAOJIE,QIZHEJIELAIDEDIANDONGMOTUOCHEXINGSHI1GEDUOXIAOSHIDAODAKANGFUZHONGXIN。XIAOJIEZAIXUNLIAN,YUJIEDEYANJINGJIUDEWUSHIWUKEDIDINGZHE,SHENGPATASHUAIZHE。ZHONGWU,ZENAZHECONGJIAZHONGDAILAIDEFANCAIZAIWEIBOLUZHONGJIARE,XIYANGXIXIACAIPIBEIDIDAIZHEXIAOJIEHUIJIA。

“ZHIYOUYICIWOJIANCHIBUXIAQU,DALENGDEDONGTIANWOFASHAOGANMAO,ZHONGXINDELAOSHIDADIANHUADAOJIALILAIZEGUAIWEISHENMEMEIDAIXIAOHAIQUKANGFU,WOSIYADISHUOZIJIGANMAOZAICHUANGSHANGDONGBULE,XIAOJIEYEBEIWOCHUANRANLEZAIJIAFAGAOSHAO,HAIZIDEFUQINZHUANQIANQULE,WOYIGERENZHENDEJINPILIJIN,WUNENGWEILI。”YUJIESHUODAO。

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XIAOJIEDEJIEJIE,JINNIAN8SUI,YIZHIGENZHEMAMAZAILAOJIASHENGHUO,GENGDUODESHIJIANSHIYOUWAIGONGWAIPOLAIZHAOKAN。TACONGXIAODONGSHI,FUMUCHUQUZUONONGHUOSHI,TAJIUYIZHIWEIZHEXIAOJIEZHUAN,FANGZHETAKEBAN,YOUHAOCHIDEYEQUANDOURANGJIDIDICHI。ZHEIJITIAN,YUJIEYAODAIZHEXIAOJIEQUGUANGZHOUZHIBING,JIEJIENANDEDISALEYICIJIAO,KUZHEQIUMAMANENGBUNENGBUYAOLIKAIZIJI。

“WOTEBIEDUIBUQINVER,WOZHIDAOZHEIYANGDUITABUGONGPING。”TIQINVER,YUJIEYANQUANYOUHONGLE。

DUIZHEIGEJIATINGERYAN,“GONGPING”SIHUCONGYIKAISHIJIUSHISHECHIPIN,ERZIDEBINGQINGRANGYUJIEZHINENGJIANGGENGDUODEGUANXINFANGZAIDIDISHENSHANG。

MEICIQUCHAOSHI,MAMAWENTA:“NIXIANGCHIDIANERSHA?”JIEJIEZONGSHIHUIDA:“WOBUCHI。”YUJIEZHIDAONVERYEXIANGHEDIANGAODANGNAIFEN,YOUCIXIANGJITAMAIYIGUAN,JIEJIEQUEYOUXINCHONGCHONG:“MAMA,ZANMENHAIYOUQIANMA?”

4

未来:孩子能成为一个健康人,有多好!

“RUGUOWOMENBUZAILE,HAIZIZENMEBAN?”

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ZHEIXIENIANLAI,CUNZILIMIANDEYIXIERENLENGCHAOREFENG,ZHOUWEIDEHAIZIXIANG“DUOWENSHENYIYANG”DUOZHEXIAOJIE。

“ZHEI3NIANLAIWOJIUMEISHUIGUOYICIHAOJUE,JIUPAHAIZISHOUDAOSHANGHAI。”YUJIEYILIANJUANDAI,CHAOZHEERZIDEFANGXIANGKUXIAODAO。

◎ SHEHUISHANGDEQISHIHEPIANJIAN,RONGYISHINAOTANHUANERCHUYUJINZHANG、JIAOLV、KONGJUZHIZHONG,TAMENZONGDANXINBEIRENJIXIAO,GANDAOCHUCHUDIRENYIDENG。/ QUANJINGSHIJUE

ZAIJIESHOUag娱乐网址登录SHENHUXI(ID:shenhuxiag娱乐网址登录)CAIFANGSHI,XIAOJIEDEBABABINGWEICHUXIAN,TAYIJING50DUOSUI,ZHEIJINIANSHENTIYEDABURUQIAN,ZHINENGHUIXIANGKAISANLUNCHEZHUANQUSHENGHUOFEI。YUJIEDEJINPOGANSUIZHENIANLINGDEZENGJIAYURIJUZENG:“YIQIANMEINEIMEFANCHOU,XIANZAISUISHUDALE,GANJUEYUELAIYUECHILI,WODOUKUAIBEIBUDONGHAIZILE。”

GUANYUWEILAI,YUJIESHUSHOUWUCE,TINGYISHENGSHUOZUOWANZHEICISHOUSHUHOU,HAIYAODAIERZIQUJINXINGKANGFUXUNLIAN,TAYEZHISHIMAMUDIDIANDIANTOU,“KANGFUXUNLIANYEYAOQIAN,JIALIGENBENNABUCHULAI!”

TAJUEDEDANGWUZHIJISHIXIANRANGHAIZINENGXIANGZHENGCHANGRENYIYANGXINGZOU,ZHIYAOWAIRENKANBUCHUTAYOUBING,TAJIUXINMANYIZULE。

◎ ZAIGUOWAI,YOUZHENDUIERTONGNAOTANHUANZHEDEJIQIRENBUTAIXUNLIANFUZHUZHILIAO。DANDUIYUYUJIEYIJIALAISHUO,ZHEIZHONGKANGFUZHILIAOKEWEIYAOBUKEJI。/ QUANJINGSHIJUE

TANHUAZHONG,XIAOJIEDEFUQINDALAILEJICIDIANHUA,DIANHUAZHEITOUTAYOUSHIHUIJIDECHAOLAOGONGDAHOU,DANMEICIHOUWANLE,TAYOUZIZEBUYI:“LAOGONGBUSHIGUYIDE,WOBUYINGGAIGENTAHAN。”

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◎ JUMEITIBAODAO,19SUIDENAOTANSHAONIANYAOJUNPENGJINNIANGAOKAOQUDE623FEN,YIZISHENDENULIGANDONGLEZHONGDUOWANGYOU。/ WEIBO@YANGSHIXINWEN JIETU

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ZHEIYANGRIFUYIRI,MEIYOUJIANQIANGDEYIZHI,ZUYIBIFENGYIGEZHENGCHANGREN。

◎ WEILERANGYAOJUNPENGJIANCHIDUANLIAN,TADEFUQINGANYUANCHONGDANGGUAIZHANG,JIUZHEIYANG,FUZIERRENDIEZAIYIQIZOUGUOHANLAISHUWANG。/ YANGSHIXINWENSHIPIN

JUBUWANQUANTONGJI,ZAIZHONGGUOYUEYOU500WANNAOTANJIATING,TAMENZHONGDEJUEDADUOSHUDUIYUNAOTANDERENZHIJIHUWEILING,ZAICUOWUDIJIANGTAMENDENGTONGYU“BAICHI、FEIREN、LEIZHUI”DEGUANNIANLI,HAIYOUXIANGDANGYIBUFENNAOTANHUANZHE,BUSHIBEIDIUQI,JIUSHIZAIBEIDIUQIDELUSHANG。

JIBIANSHIFANGDAOJINTIAN,NAOTANJIATINGDEKUNJUYIRANCUNZAI,NAOTANDEKANGFUJIANGSHIYIGEJIANJU、MANZHANGDEZHONGSHENGUOCHENG。YOUZHENGFUXINGBANDEZHUANYEDECANJIRENKANGFUZHONGXINMIANLINXUEWEIJINQUEDEQINGKUANG,TAWUFAXIANGPUTONGDEXUEXIAOYIYANG,MEINIANNENGTENGCHUYIBUFENXUEWEILAI。KANGFUZHILIAOWANGWANGHAOSHIHAOLI,RUODANGDIYINIANXINZENGDUOLINAOTANHUANER,ZEKENENGMIANLINWUFAKANGFUDEJUMIAN。ERMINBANDEKANGFUZHONGXIN,DANSHIGAOEDEZHILIAOFEIYONGJIUNENGESHAYIDABUFENPINKUNDENAOTANJIATING。

◎ 2020NIAN6YUE,WOGUOSHOUBU《NAOXINGTANHUANERTONGKANGFUFUWUTUANTIBIAOZHUN》FABU,YOUWANGZENGQIANGNAOTANERTONGKANGFUFUWUNENGLI。/ WANGLUOJIETU

CIWAI,NAOTANHUANERDEJIAOYUWENTIYECAOSUILEJIAZHANGDEXIN。TESHUJIAOYUXUEXIAOZAIHAO,TAYIRANXIANGYIGE“LAOLONG”,WUXINGZHONGJIANGNAOTANHUANERYUSHEHUIGEJUEKAILAI,SHENZHIQIZHONGYOUYIBUFENHUANZHEZHILIZHENGCHANG,YUANBENKEYIQUPUTONGXUEXIAOSHANGXUE。

DANYAOZHENQUPUTONGXUEXIAOSHANGXUE,JIAZHANGSHIFOUXUYAOHUONENGGOUPEITONG?NAOTANERSHIFOUHUISHOUDAOQISHI?BEIGULI?ZAIXUEXIAOLAOSHIKOUZHONGQIANDINGWANZHUXIADE“YUZHONGBUTONG”SHIFOUHUIRANGNAOTANHUANZHEYUZHENGCHANGXUESHENGCHANSHENGGEMO,ZESHILINGYIGEBUDEBUMIANLINDEWENTI。

“WULI”SHINAOTANHUANERJIRENZUISHENKEDEYINXIANG,YESHITAMENRENSHENGDECHANGTAI。CONGKANGFU、JIAOYU、JIUYENAIZHIZHENZHENGRONGRUSHEHUI,TAMENYAOZOUDELUHAIHENZHANGYEHENNAN。

(本文中玉姐、小杰均为化名)

* 封面图来源:全景视觉


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